Hello all; I’m frustrated and hope you all will have some insight for me.
I was diagnosed with Crohn’s in late April of 2013 (symptoms began at the beginning of March of 2013). At the time of that initial scope, I had “patches of inflammation throughout the colon and in the end of the small intestine” along with some aphthous ulcers. The GI put me on Asacol at that time (first 2400 mg daily, then 48oo mg daily). At the time of diagnosis, I was at college, and I went home about two weeks later. The GI I saw at home was horrified that the first GI had only put me on Asacol and immediately started me on six weeks of prednisone (started at 20 mg daily and tapered down). About two weeks into the prednisone, he started talking about starting me on either Remicade or Humira. At the end of July, I started Humira and saw immediate results.
A month later, I went back to school and began going into a flare. I was in denial at first, but saw my initial GI (or more accurately, the NP that he’d sent me to) at the beginning of October and was taken off of Asacol at that time. I had an MRE which showed two strictures, one in my terminal ileum, and one a bit higher up in the ileum. Apparently they were “too mild to be causing symptoms.” A colonoscopy and EGD three weeks later showed mild inflammation in my terminal ileum and rectum. I was then put on Canasa to treat the inflammation in my rectum. In November 2013, I had a capsule endoscopy and was admitted to the hospital two days later for what turned out to be severe constipation. The diagnosis of IBS was thrown around a bit. I should probably note here that I’ve had constipation issues since I was still in diapers that were very well controlled with diet prior to my immune system going berserk. In December, I was told that I was in remission and that my GI would soon be retiring. I was then referred to another GI in the same clinic. In January, I began having severe joint pain that escalated to include almost every moveable joint in my body. My awesome NP at the student health clinic gave me tramadol so that I could function during the day and sleep at night while she put through a referral to rheumatology.
Fast-forward to April 2014. I was having daily pain and nausea. I went to my new GI, who ordered another MRE which showed exactly the same thing the first one did: two strictures in my ileum (no change in the amount of narrowing) and a lot of stool in my colon. She called it constipation and sent me on my merry way with a script for Bentyl (which, by the way, doesn’t do much for me). Around that same time, I also saw a rheumatologist who couldn’t diagnose me and said that my joint pain was likely linked to my Crohn’s (but apparently not enough so to call it Crohn’s-related arthritis).
Then, in July, I had pain so severe that I was considering going in to the ER along with severe nausea. I called my GI’s office, and the triage nurse advised me to go to the ER because neither my GI nor the NP that I had seen before had any available appointments. In the ER, the doctor gave me IV fluids and ordered an abdominal x-ray which showed “a moderate amount of stool in the colon” and advised me to follow up with my GI. I called my GI the next day, and the nurse said that she’d talked to my GI and that my GI believed that it was IBS/constipation but didn’t bother doing any further examination. I was very pissed off and immediately scheduled an appointment with my NP at the student health clinic. She was frustrated that neither my GI nor the ER doc was doing anything for me. She asked me if I’d been given any meds for the nausea. When I said no, she asked, “Well, why not?!” and gave a script for 12 pills of 8 mg of Zofran (I still have some. Given how hard it was to get my hands on those, I guard them with my life and only use them when absolutely necessary. In August, I once again had pain so severe that I considered going to the ER but decided to try to wait until morning and call my GI first. This time, they got me in to see the NP that I had been seeing before my previous GI retired. She ordered another colonoscopy and EGD. My GI was not the one doing the procedure. The GI who did the procedure found inflammation in the rectum and apthae in the terminal ileum. The biopsies showed inflammation in the terminal ileum and irritation of the stomach. I assume they showed inflammation in the rectum as well, but I didn’t need a scope, much less biopsies, to know that.
I followed up with my NP about 10 days ago. She told me that although there was inflammation in my GI tract, it was so mild that it couldn’t possibly be causing my symptoms. Instead, she said that she believed that I had IBS and advised me to see a counselor (not a bad idea, but given how little I trust anyone at her clinic, including her, I will not see anybody that she recommends and will instead go to my school’s counseling center if I choose to go that route). She also suggested keeping a journal of symptoms, food intake, exercise, and stress on my bad days.
Thankfully, I’ve only had two really bad days since then, which is irritating in its own way because I have almost nothing to show in my journal, and I fear that my GI NP will see that as noncompliance. At this point, I don’t trust a single person in her clinic, including her. My concern is that as long as there is inflammation in my GI tract, my body will continue to damage and re-heal itself, which will cause more scar tissue to form, which will worsen my strictures. Alternately, the inflammation in my rectum could cause various manifestations of perianal disease. Either of these possibilities could lead to a need for surgery.
I don’t particularly appreciate the way that this NP said that my Crohn’s can’t be causing my symptoms (even though there is inflammation in each of the areas that has been hurting) and that it is “all in my head.”
So, thoughts, anyone? Time to have another discussion with my awesome NP at the student health clinic, maybe send my records to the GI back home (and his clueless staff), or seek another opinion from a GI at the only other GI clinic in town? Or am I completely wrong about this situation and my GI NP has got it right?
:sign0085:
I was diagnosed with Crohn’s in late April of 2013 (symptoms began at the beginning of March of 2013). At the time of that initial scope, I had “patches of inflammation throughout the colon and in the end of the small intestine” along with some aphthous ulcers. The GI put me on Asacol at that time (first 2400 mg daily, then 48oo mg daily). At the time of diagnosis, I was at college, and I went home about two weeks later. The GI I saw at home was horrified that the first GI had only put me on Asacol and immediately started me on six weeks of prednisone (started at 20 mg daily and tapered down). About two weeks into the prednisone, he started talking about starting me on either Remicade or Humira. At the end of July, I started Humira and saw immediate results.
A month later, I went back to school and began going into a flare. I was in denial at first, but saw my initial GI (or more accurately, the NP that he’d sent me to) at the beginning of October and was taken off of Asacol at that time. I had an MRE which showed two strictures, one in my terminal ileum, and one a bit higher up in the ileum. Apparently they were “too mild to be causing symptoms.” A colonoscopy and EGD three weeks later showed mild inflammation in my terminal ileum and rectum. I was then put on Canasa to treat the inflammation in my rectum. In November 2013, I had a capsule endoscopy and was admitted to the hospital two days later for what turned out to be severe constipation. The diagnosis of IBS was thrown around a bit. I should probably note here that I’ve had constipation issues since I was still in diapers that were very well controlled with diet prior to my immune system going berserk. In December, I was told that I was in remission and that my GI would soon be retiring. I was then referred to another GI in the same clinic. In January, I began having severe joint pain that escalated to include almost every moveable joint in my body. My awesome NP at the student health clinic gave me tramadol so that I could function during the day and sleep at night while she put through a referral to rheumatology.
Fast-forward to April 2014. I was having daily pain and nausea. I went to my new GI, who ordered another MRE which showed exactly the same thing the first one did: two strictures in my ileum (no change in the amount of narrowing) and a lot of stool in my colon. She called it constipation and sent me on my merry way with a script for Bentyl (which, by the way, doesn’t do much for me). Around that same time, I also saw a rheumatologist who couldn’t diagnose me and said that my joint pain was likely linked to my Crohn’s (but apparently not enough so to call it Crohn’s-related arthritis).
Then, in July, I had pain so severe that I was considering going in to the ER along with severe nausea. I called my GI’s office, and the triage nurse advised me to go to the ER because neither my GI nor the NP that I had seen before had any available appointments. In the ER, the doctor gave me IV fluids and ordered an abdominal x-ray which showed “a moderate amount of stool in the colon” and advised me to follow up with my GI. I called my GI the next day, and the nurse said that she’d talked to my GI and that my GI believed that it was IBS/constipation but didn’t bother doing any further examination. I was very pissed off and immediately scheduled an appointment with my NP at the student health clinic. She was frustrated that neither my GI nor the ER doc was doing anything for me. She asked me if I’d been given any meds for the nausea. When I said no, she asked, “Well, why not?!” and gave a script for 12 pills of 8 mg of Zofran (I still have some. Given how hard it was to get my hands on those, I guard them with my life and only use them when absolutely necessary. In August, I once again had pain so severe that I considered going to the ER but decided to try to wait until morning and call my GI first. This time, they got me in to see the NP that I had been seeing before my previous GI retired. She ordered another colonoscopy and EGD. My GI was not the one doing the procedure. The GI who did the procedure found inflammation in the rectum and apthae in the terminal ileum. The biopsies showed inflammation in the terminal ileum and irritation of the stomach. I assume they showed inflammation in the rectum as well, but I didn’t need a scope, much less biopsies, to know that.
I followed up with my NP about 10 days ago. She told me that although there was inflammation in my GI tract, it was so mild that it couldn’t possibly be causing my symptoms. Instead, she said that she believed that I had IBS and advised me to see a counselor (not a bad idea, but given how little I trust anyone at her clinic, including her, I will not see anybody that she recommends and will instead go to my school’s counseling center if I choose to go that route). She also suggested keeping a journal of symptoms, food intake, exercise, and stress on my bad days.
Thankfully, I’ve only had two really bad days since then, which is irritating in its own way because I have almost nothing to show in my journal, and I fear that my GI NP will see that as noncompliance. At this point, I don’t trust a single person in her clinic, including her. My concern is that as long as there is inflammation in my GI tract, my body will continue to damage and re-heal itself, which will cause more scar tissue to form, which will worsen my strictures. Alternately, the inflammation in my rectum could cause various manifestations of perianal disease. Either of these possibilities could lead to a need for surgery.
I don’t particularly appreciate the way that this NP said that my Crohn’s can’t be causing my symptoms (even though there is inflammation in each of the areas that has been hurting) and that it is “all in my head.”
So, thoughts, anyone? Time to have another discussion with my awesome NP at the student health clinic, maybe send my records to the GI back home (and his clueless staff), or seek another opinion from a GI at the only other GI clinic in town? Or am I completely wrong about this situation and my GI NP has got it right?
:sign0085:
